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I'm Scared to Death

I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.

There are things you can do. Many good threads to read about eating right and taking supplements that help the nerves to heal or at least improve.

Do you keep good track of your glucose levels? I have normal blood sugar, no problems at all but I test it. I used to test more often and I found what gets my level up. I have not seen anything above 120 one hour after a meal. That was after potatoes. Low good carbs and almost no sugar keeps my level at about 85 after a meal. Nerves do not want lows or spikes. They are sensitive to sugar and toxins of all kinds.

I have an integrative MD that knows the supplements I need for my Chronic Fatigue Syndrome and my Dysautonomia/P.O.T.S. caused by autonomic neuropathy. Peripheral Neuropathy also.

I take Alpha Lipoic Acid, Benfotiamine (a good vit. B1) l carnitine (Carniclear liquid) B12, pregnenalone and ones to help the body heal, the immune system also.

The other part is diet. Nutrient dense foods like kale are good. "Minding my Mitochondria" is a great book. I don't eat gluten or junk carbs. For sugar, I use honey, real maple syrup and coconut palm sugar. Only foods full of nutrients.

Hi... I'm so sorry that you are going through what you are going through, many of us here can relate to you, please try not to be so scared, there are many things you can do to help your symptoms and prevent further damage to your nerves, as mentioned in above post eating better and exercising can help prevent further damage. Also there are threads in the stickies about nutrition and vitamins, please read the stickies. There is hope for you, remember that having diabetes means you really have to be careful with your diet it's really really important so that your nerves will be preserved. I personally have small fiber neuropathy throughout my whole body so I experience pain and numbness everywhere, it's really hard, I take gabapentin and it helps somewhat, so maybe you need medication to help your symptoms, I know having neuropathy is difficult but you can live a productive life. Just a personal note about myself, I am a Christian and I depend heavily on my faith in the Lord Jesus Christ to carry me through everyday, God cares about you, I promise if you look to him he will get you through! There are many people here who are more knowledgable then me about neuropathy, hopefully they will respond to you as well, this is a good place to come for advice and just vent, we all need that. You will be ok. Blessings, Jan

I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.

The hardest part of having PN was acceptance. I try not to give into the feelings of hopelessness and make the most of each day. Am taking many of the supplements that do often help with regeneration of the nerves. I do take pain meds; i.e. Oxycontin and Oxycodone(percocet) for breakthru pain. They do not take pain away; but at least make each day more tolerable.

Hi, the good news is that peripheral nerves do have the ability to regenerate, it is a very slow process though.
It is solely up to you on how well you manage your sugars to start the healing process, as Sally said nerves don't like high spikes or lows, so it is a must to keep your sugars as close to non diabetic numbers as possible, don't take any notice of doctors that know zero about nerve regeneration, if the nerves are hurting they are still alive so they can get better over time.

Hi,
I just joined today and had to tell you that i understand how you feel. Before I say anything else, I will say one word, "Lyrica". If your neurologist has not given it to you, request it. No guarantees, but it has helped me tremendously and enabled me to function.
For many years I have been in pain from a litany of auto-immune diseases, all of which gave me some form of pain which I was always able to handle. I developed neuropathy a few years ago but that too was manageable. Then one day I was walking and I suddenly doubled over from pain in my foot. It went away but a soreness lingered for hours. As the days went by, the pain became more frequent going from one leg to the other sometimes in both at the same time. The pain spread from my feet to my calves and was excruciating. It was also in both hands causing unbearable cramping. I saw my internist, my rheumatologist and finally a neurologist that I had never seen before. He listened to my symptoms, checked a few things and said he suspected it was idiopathic small fiber neuropathy. Idiopathic means, "We have no idea what's causing it!" A few days later he did a punch biopsy (sounds worse than it is) and confirmed the diagnosis.
At the end of my first visit he prescibed Lyrica. I had taken it once before for post shingles pain and probably due to the massive dosage I was given, had the rare side affect of alopecia-hair loss. You can imagine that I was hesitant to take it again but he prescribed it for just 50 mg twice a day. this drug is amazing!!!! With two days, the pain and heaviness in my legs had lessened to the point where I was able to walk easily and participate in life.
The disease has progressed and is now up to my thighs and my elbows and I have had to increase my medication to three times a day. My phamacist said the highest dosage is 300mg three times a day so hopefully the disease will never outrun the medication.
I would love to know if this drug works for you. Pain is a very difficult thing to deal with. I may be 66 (tomorrow) but I have had pain since I was 14 so I can totally empathize with how it is affecting your life. Good luck and I hope it works for you.

Quote:

Originally Posted by knicoole

I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.

When I come to this forum and read here, I pray for all of you, including myself and anyone with this. It can seem so overwhelming when you first start this journey but you have to believe, have hope, and take control of your health.

I tell myself : I can be powerful or I can be pityful...but I can't be both.

I choose power.

Don't give up. Don't expect others or doctors to fix you. Keep a positive attitude, for me that is prayer and God. Believe you can make a difference. Most of all, make a daily choice to strive for better health each day. You have to work for it, it doesn't fall in your lap.

I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.

Welcome to the site! I am sorry you are going through this but there are many knowlegeable people here who can help. The one thing I hear you saying is you blame yourself. Try to remember it doesn't matter what caused the neuropathy. You have to take care of yourself as of today! Looking backwards will only bring you stress and sorrow. Stress definitely makes neuropathy worse. Let go of the past and try to start taking one day at a time. What you do now may determine how your neuropathy will progress.
Look toward the future not the past!! Good Luck

I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.

Damn, you sound like me when I was 19 - I was doing so much to kill myself, and it never happened, so I kept doing a lot of things that I figured would kill me instead of not ending up with endless suffering and I blew it. You are probably screwed like the rest of us, but you can find medications/vitamins/supplements/diet that will relieve your pain. I have neuropathy in my feet, and I get every symptom that you can have and I take:
Tramadol
Gabapentin (neurontin)
Vicodin
Cymbalta

Tramadol and vicodin for the sheer (breakthrough) pain of it, neurontin and cymbalta for the burning and stinging. Take vitamin B out the yingyang and multiple and Vitamin C. Magnesium and potassium for the muscles and dehydration from taking the pills. Get on an anti-depressant to help with the stinging and with the depression itself.

But yeah, please don't give up on your life just yet, stick with us and we will help bring you out of the despair. At least most days. *smile*
Bruce

There are things you can do. Many good threads to read about eating right and taking supplements that help the nerves to heal or at least improve.

Do you keep good track of your glucose levels? I have normal blood sugar, no problems at all but I test it. I used to test more often and I found what gets my level up. I have not seen anything above 120 one hour after a meal. That was after potatoes. Low good carbs and almost no sugar keeps my level at about 85 after a meal. Nerves do not want lows or spikes. They are sensitive to sugar and toxins of all kinds.

I have an integrative MD that knows the supplements I need for my Chronic Fatigue Syndrome and my Dysautonomia/P.O.T.S. caused by autonomic neuropathy. Peripheral Neuropathy also.

I take many supplements, three times a day. Alpha Lipoic Acid, Benfotiamine (a good vit. B1) l carnitine (Carniclear liquid) B12, pregnenalone and many other things to help the body heal, the immune system also.

The other part is diet. Nutrient dense foods like kale are good. "Minding my Mitochondria" is a great book. I don't eat gluten or junk carbs. For sugar, I use honey, real maple syrup and coconut palm sugar. Only foods full of nutrients.

Hi Kncoole, sorry for all your pain and suffering. I understand your fear. SFN can be overwhelming and scary. Hang in there, as you willl find out many people on here have lots of good advice and recommendations. I learned more from talking to people on here, then my own doctors! Hope you feel better soon

Hi Sallysbloom,
You said you have normal blood sugar, but you test it. Are you diabetic or prediabetic and what type of neuropathy do you have.? I was dx with small fiber neuropathy, (punch test) no known cause! This is very upsetting and confusing for me, I was always active and healthy. But funny I was dx with predib. The reason I ask is because Im wondern if the vits B1, B12, R lipoic acid,carnitine you mentioned are they mostly benefically for diabetics? You also mentioned you have autonomic neuropathy. My question is how does one know if they have auton neuropathy, when most symptoms ex: constipation /nausesa can be symptoms of many other problems? How did you find out your low BP/dysautonomia was caused from auton/neurop?

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